The Interagency Autism Coordinating Committee approved a strategic plan that prioritizes research into neurodevelopmental regression. The committee held its second meeting to finalize the document, which proposes new research infrastructure focused on understanding neurodevelopmental regression.

The draft strategic plan gives little emphasis to genetics, genetic medicines, neurodevelopment, and brain biology. Instead, the plan devotes attention to neurodevelopmental regression, which affects about 30% of autistic individuals. The new plan puts considerable emphasis on finding medical causes of early childhood regression, including immune, metabolic, mitochondrial, infectious, and gastrointestinal factors.

During the meeting, committee members shared stories about their belief that vaccines caused their children's autism. Thousands of pages of public comments were not distributed to committee members until the night before the meeting. The Interagency Autism Coordinating Committee chair shut down efforts by committee members to delay voting on the plan.

The chair said several times that the new strategic plan was based on a decade of public comments that previous IACC committees had ignored. The chair noted that identifiable genetic variants account for "only about 20% of autism cases". He also noted that antisense oligonucleotides are only available for a tiny subset.

This focus on regression comes as genetic medicines including antisense oligonucleotides, small molecules, and CRISPR editing are being developed to treat monogenic forms of autism. Human clinical trials in monogenic autism, including SCN2A and UBE3A, are showing results. At the last International Society for Autism Research meeting, a presentation reported that a 50-year-old man with UBE3A deletion who was dosed with an antisense oligonucleotide spoke his first word. In a recent SCN2A trial, a young boy experienced a 90% reduction in seizures.

Hundreds of genes have been associated with autism. In approximately 20% of autistic individuals, a specific genetic variant can be identified as the primary cause of their condition. A study published in Science mapped more than 1,800 protein-protein interactions across 100 autism risk genes. The study showed that different genetic changes converge on shared biological pathways.

Why It Matters

The strategic plan directs federal research priorities under the mandate of the Combating Autism Act of 2006 (Pub. L. 109-416), which was reauthorized by the Autism Collaboration, Accountability, Research, Education and Support Act of 2024 (Pub. L. 118-180).

The Office of National Autism Coordination (ONAC) within the National Institute of Mental Health (NIMH) at the National Institutes of Health assists in the administration of the Interagency Autism Coordinating Committee. The National Institutes of Health conducts an Autism Spectrum Disorder (ASD) research portfolio analysis to collect funding data from U.S. and international ASD research funders, assisting the IACC in fulfilling requirements of the Combating Autism Act and informing stakeholders of the funding landscape.

The shift in focus impacts how the emphasis on neurodevelopmental regression will impact funding for monogenic autism research. It remains unclear what specific infrastructure will be built to study neurodevelopmental regression. The plan diverges from previous strategies, such as the research titled "The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research" which was published in 2010 in PsycEXTRA Dataset.

What's New

The Interagency Autism Coordinating Committee (IACC) operates under the mandate of the Combating Autism Act of 2006 (Pub. L. 118-180).

Research titled The 2010 Interagency Autism Coordinating Committee Strategic Plan for Autism Spectrum Disorder Research was published in 2010 in PsycEXTRA Dataset.

How Sources Differ

Sources differ on the role of the coordinating committee.

Sources also differ on the interagency autism coordinating committee. L. 118-180).

Further differences exist regarding the interagency autism coordinating committee.